Day 70: Shadows of action #107days

Day 70 was adopted by Yvonne Newbold who wished to write this blog post to share some of her own personal reflections on LB and Sara’s experience, and the similarities to those of her and her son Toby. This is why Yvonne wanted to get involved:

I’ve never met Sara, nor did I ever meet her son, Connor (LB), yet the shock I felt when I first heard about his preventable death is something that will live with me forever, and which has developed into a searing sense of outrage and anger as I watch the NHS handling of this tragedy unfold.

You see, I also have a severely learning disabled son, who also has severe autism, and I also recently had to entrust his care to others due to my own ill health. His name is Toby and he is 20 years old. There is a real sense of ‘this could have been, or one day might be, our story’. I also know what it’s like to be fobbed off, discredited and abandoned by the NHS as Sara has been since LB’s death, because when you are a parent of a different child, these things seem to happen all the time.

Although I have never met Sara, there is an affinity which exists between parents of children with disabilities, an understanding that transcends normal communication, a sense that we each simply ‘get it’ in a way that the so-called expert professionals very rarely do. To me, LB, Sara, Toby and I, along with every family coping with the issues that disability brings, are all part of the same tribe, a family of sorts. What happens to one of us is personal; it hurts all of us.

This is what she has to say:

Something rather insidious has happened to our society in the past couple of decades since LB and Toby were born, and being a parent of a son who is reliant on the Statutory Services, I’ve watched it spread and become acceptable from a front-row seat.

A culture of fear has taken hold among those working within our health, social care and education services, a fear that paralyses them and prevents them from doing the job for which they are paid; which is to protect and support the most vulnerable members of our society. Instead this culture of fear has turned their priorities upside-down. They now seem to do all they can to protect and support themselves and each other, and maintain the reputation of the organisation they work for.

When organisations have their funding and future survival of services tied to the vagaries of abstract key indicator targets to the extent that we have allowed it to happen, there is a huge vested interested to paper over the cracks, bury any mistake that happens, and create systems that cover their backs rather than reach out to help those in most need. When this trend is also happening alongside a society becoming more litigious year on year, the focus becomes even more self-interested.

They have to keep up appearances make everything seem excellent and tickety-boo, with no room to admit that human errors sometime happen. The people who work in these environments are no longer able to make autonomous decisions; we have all seen the growth of the interminable meetings where even the smallest things are now decided by committee. Joint decisions are always watered down and become half-baked shadows of the actions really needed. No one is able to stick their head up over the parapet anymore and say something sensible, because they are all too scared. Using one’s own initiative is frowned upon but how can you truly care for someone in any meaningful way without being allowed to sometimes think on your feet?

No one takes personal responsibility in these organisations anymore because they aren’t allowed to. Meanwhile young people like LB die, because if no one takes personal responsibility, so no one can apply common sense, and it’s also, of course, no one’s actual fault.

The unspoken mantra is ‘cover our backs, cover our backs, cover our backs’. The staff feel compelled to collude with management to hide any weaknesses or failings. Reputation is king. Any weakness or failing that comes to light is minimised, or side-lined or hidden away. Truths are spun and twisted, any insider who tries to speak out is pilloried as a whistle-blower. If failings cannot be neatly filed away, they sometimes find a scapegoat, and publicly pillory them as well. No wonder the staff are so frightened.

The upshot is that staff bring that fear into every encounter with those in their care. The emphasis changes, again to protect themselves. For every few minutes they spend with those they care for, several more minutes must be spent writing down everything that happened during those two minutes, just in case something ever comes back to bite them on the bum sometime in the future. What they write doesn’t always reflect what did actually happen during those two minutes either; it has to be skewed to fit the text-book version of what would sound best.

So all the reports are written, all the boxes are ticked, and they can produce their swanky glossy brochures telling all and sundry how marvellous their service is. Their backs are turned away from those who really matter and meanwhile LB drowns, and countless others continue to be short-changed.

Our young people deserve better, and things must change for the better, too, and fast. The staff who work for these organisations don’t want to work in a culture of fear anymore either. The vast majority care passionately about making lives better, but their hands are tied by fear.

Mistakes happen, we all know that. When they do, parents like Sara deserve the level of respect that can only come from complete honesty, truth, compassion, empathy and sincere apologies. It is the only acceptable way to behave. Particularly in LB’s case, when that mistake was one that had been waiting to happen for far too long.

As Yvonne says in her post, this mistake had been waiting to happen, but not just that, now it has happened LB’s family and friends are left to raise funds to cover legal costs to bring Justice for LB. So, rather than use an image of LB for this post, I’ve used the party tickets, for the party night happening this weekend, Saturday 31 May and there is still time to get tickets and come along, all support gratefully appreciated.

LBPartyNight

 

Day 67: The clients are revolting #107days

Day 67 was adopted by Amanda, pictured here with her daughter, Jazz.

Jazz&Amanda

Amanda is founder of The Open Nest and in this post she shares her own thoughts, feelings and experiences as a professional, as a mother, and as a supporter of #JusticeforLB.

When I was a social work student I specialised in working with groups of people who needed to access social care but were often voiceless or suppressed within the system. As with all those who seek state support these people were referred to as ‘clients’ of the services. This is actually where it began to irk me. Clients as a word suggests business. Not as is in ‘clients have a strong voice and will not be messed with’, but rather clients are one cog in the big wheel of the business and the huge industry of care that we seem to have developed in this country. By a twisted world upside down effect it seems those in need can now be quite comfortably viewed as a bit of a problem, a glitch or even a drain on the ‘care’ industry.

As part of my practice based learning. I devised a ‘Clients Committee’ model. The purpose was to facilitate an independent user led group made up of adults with learning disabilities (another label that now irks me seeing as I’ve met many social care managers who seem to find it harder to learn than their clients). Anyway, the dude ‘clients’ attended an adult training centre and once a week I would take their meeting minutes for them based upon their conversations around changes in the support services they felt were needed. A lot of the talk centred around rights to have relationships, to choose their own individual style and to have more funding for the meeting to get better sandwiches. Nothing changed. It was an ‘interesting’ experiment, a token gesture. It was still a shit sandwich.

After proceeding to work with ‘clients’ of women’s refuges, traveller sites, drug and alcohol projects and HIV services, I had seen enough. In almost every area of social care I saw the ‘clients’ often remain static in their position of powerlessness and unmet need whilst workers gained power, very often by being the agents of budget control and the keepers of the status quo.

Some things I have experienced in working practice, although seemingly small, stand out. I was once given the job of making sure ‘clients’ with HIV or AIDs who came into a drop in centre could access healthy and nutritious food. The budget to feed up to 12 clients per day was £12. I became a master at fresh vegetable and fruit shopping. One day the big bosses from the NHS were coming for a meeting. As well as my usual £12 for the ‘clients’ the manager of the project gave £50 that day for a meeting ‘buffet’. I felt furious. When I questioned this I was met with a wry smile (a manager’s special) and a response that patronised me as being a quaint but outdated revolutionary.

Incidents of this nature were not rare and led me to feel personally unable to work inside such systems. Subsequent academic study led me to analyse, once again, how certain groups of people are marginalised, although this time it was culturally through the mediums of the popular press and television.

Everything I experienced led me to a life changing decision to become an adoptive parent to a very young dude (whose mum was also a dude) and who needed some full on support and advocacy.

In that process my daughter and I both, like her birth mum, became ‘clients’ of the social services as well as the health authority. In the eyes of the care system I became just ‘mum’. Declawed and unprofessional. My daughter became a person talked about in her presence as if she were invisible and whose name they could never spell right in her correspondence no matter how many times she told them.

When Mencap were eventually wheeled in to support my daughter they covered the backs of the poor practitioners whose incompetence eventually caused her serious harm. Even a National charity for dudes is not beyond bending or editing the truth, of selling their ‘clients’ out if commissioning is at stake. And they are not the only ones.

There had been a gap of many years between my training to work with social care ‘clients’ and my becoming one myself. I thought things would have moved on and ‘lessons would have been learnt’. More fool me. Despite the annual reporting of abuses in social care settings and harm coming to clients of the health and social services being featured on news items and documentaries, poor practice, tokenism and budget led interventions seem still to prevail.

Some practice failures may be small but when on the receiving end they can be the proverbial straw. My personal ‘shit practice gong’ of this month goes to a health visitor who rang one of my family members at home to congratulate her on the birth of a lovely baby daughter and to arrange a hello visit. Would have been a thoughtful gesture if her baby hadn’t been still born the previous week.

But now to Connor. I didn’t know him or his family but I have felt personally touched by his appalling and avoidable death and the strength and bravery of his family and friends in the darkest of times.

Initially the shock was in hearing he had died. This shock became compounded by the response from Southern Health to his death and to his mothers grief. It is truly incomprehensible to me.

I cannot pretend to feel the grief or have any true understanding of what Connors family are going through. But I know I genuinely feel empathy, a sense of there but for the grace of god go all of us and a really huge feeling of anger.

My daughter was on the verge of being admitted to an assessment centre not very long ago and the conversations with me around this potential intervention chilled me to the bone. She would not be able to have contact with me initially nor could she take in her security pillow, her phone or any familiar objects from home. The inference from the start was that ‘we need to see how she is away from you because it’s probably some family or home issue that is the real problem”. I read with horror Mark Neary’s recent blog about his sons anxiety at being severed from his place of safety in the name of a professional assessment. But our children didn’t die.

I know there are great and emotionally intelligent expert professionals in both social work and health care and I know professional bashing is a hard stance to take in times of low resources and outsider aims at ‘criticise to privatise’, but how could Southern Health be so cruel.

You can’t buy or train in truth, empathy and remorse anymore than you can illicit forgiveness and understanding via a cold bureaucratic and funded PR fob off.

The response to this case from Southern Health bosses shows the emotional maturity of a small child who is denying they ate the chocolate when it’s clearly all around their mouth. I find it embarrassing.

The people who support Connor and his family are collectively angry. We don’t feel like being particularly polite or forgiving of the unavoidable death of a healthy young person through negligence and poor practice. This isn’t something that happens to all of us but the lead up to it, the ignorance and pseudo care that allowed it to happen is recognised by many of us in our experience of being a ‘client’ or the relative of a ‘client’.

Southern Health can accuse Sara of being difficult to handle, suggest she might perhaps move on now, infer that Connor was just another ‘client’ who sadly had an unfortunate accident, that those seeking justice for him and other dudes are akin to internet trolls, but it won’t wash. Its bigger than them. We are far too revolted and Sara’s strength as a campaigner in love and honour of her son means she is now leading what could easily become a significant and broader revolution in how society views, talks about and supports all dudes in this country.

I for one am living in hope of significant cultural change being instigated by this campaign. No matter what Southern Health do to discredit the integrity of Connor and Sara’s experience, no matter how much they cover their eyes, ears and especially their backs, it wont change that.

You still have time to get involved with the #107days campaign if you wish to join Amanda, and so many others, revolting for a better society. Next weekend, Sat 31 May, is the party night to end all party nights, and it would be great to see some of our online supporters in the flesh!